Early Intervention

We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

What a brilliant way to put it, Megen! Thank you!

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.

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9 responses to this post.

  1. […] Source: Early Intervention […]

  2. Fantastic. Yes. My son is not autistic, but is not neurotypical. It was a lot of work to figure out how his brain worked and the best ways to deal with behavioural and educational issues to his best advantage. My search for answers and in depth research was not to ‘make him normal’, but to figure out how to help him to learn and to navigate life successfully as the person he is.

  3. Wonderfully upbeat post, thanks, and such good advice!

  4. Love this post and so much truth and wisdom here. Could this be a follow up somehow attached to DOAM’s “Welcome to the Club”? That would be fabulous.

  5. Wow–this is an amazing blog! Can I share some things with you and (hopefully) get your feedback?

    We are parents of two boys (8 and 6) with sensory processing challenges. It is much more pronounced in our youngest, who has been getting an hour of OT each week since he was 2. He is diagnosed SPD.

    He is a “seeker” and has some dyspraxia. He just entered the public school system in Kindergarten with an IEP. Early reports are all positive, after a summer of pretty horrible temper tantrums that had us both extremely worried. He is sociable, does decent eye contact (probably better than me most of the time!) is into imaginative play and is extremely verbal. My wife and I have both noticed some big changes just in the last 3 months or so, all for the positive.

    He is a thumb sucker. But I’ve noticed he doesn’t do it when he’s getting “good” input from other sources, like when we are doing an activity or taking a family walk. He tends to do it more when he is tired or watching tv.

    Just recently, he has decided to create a series of “comic books” he calls “The Stinkers.” It started when he tried to make a Birthday card for someone and got frustrated that he couldn’t draw the heart. He had the idea, totally on his own, to turn the heart into a character called a “stinker.” It has a tail like a bumblebee, arms and legs, and a face that is always smiling. Think of it as a heart-shaped Minion.

    Now, he’s making these little Stinker books (big construction paper fold in half) for us every day, and introducing new characters (Stinkers + Minions, Stinkers + Family members, and this morning, Stinker + Minions vs. a dragon). The cutest thing is that he want us to give him “book reviews” for them, so my wife and I write notes giving him “4.5 stars” or a “10/10” rating.

    We’re still not sure exactly of his neurologic status. He has not been formally diagnosed ASD–his pediatrician poo-pooed the idea. He has pretty much hit his milestones. But he definitely has some issues with self-regulation, sensory integration, and social cueing.

    My wife is an OT who stopped working in to focus on raising both of our boys. She is AMAZING. She has raised them with such incredible love, kindness, and empathy….while also helping them on tasks.

    Now, I find myself wondering….did we make mistakes? Should we have done the formal behavioral therapies starting an early age? Did we cop out by just doing an hour of OT per week? Is there more we should be doing even now? Or is it “too late?” There are so many conflicting messages out there about interventions, and we aren’t even sure what exactly we are dealing with.

    I know I’m rambling–just a scared, confused dad who is waking up to the fact that I have a son who is different (but WONDERFUL!).

    • First off, your son sounds delightful! Clever, creative, engaged. It’s natural to worry about whether you’re doing enough for your children or not, but it sure sounds to me like you and your wife are doing a great job of raising your boys. Your youngest son sounds very happy and emotionally healthy. He found the patience for problem-solving and he even did exactly what us adults are always telling each other: if you get lemons, make them into lemonade. Or Stinkers, in this case!

      When I first learned about the idea that early intervention is crucial because there is a limited window of time in which to effect positive change and that window closes forever afterwards, I was filled with grief . . . for myself. I was identified as a child but never told what my diagnosis was. I knew there was “something” because I saw therapists throughout my childhood, starting at age five. My teen years and twenties were quite troubled and it was in my thirties that a doctor finally told me that I am Autistic. I was shocked. I started reading everything I could. And when I learned about the supposed importance of early intervention, I grieved deeply because I was sure that meant that I was stuck forever in the troubles I had grappled with for my entire life. I thought missing that “window of opportunity” meant there was nothing more that could be done for me.

      But here in my forties, I’m realizing that it’s never “too late” for neurodivergent folks (neurodivergent just means there’s *something* different from the mainstream about someone’s neurology. Your son’s doctors have shied away from an official ASD label, but the sensory processing issues mean your son is still neurodivergent and will probably always do some things a little differently from others, even if those differences become very subtle when he gets older.) I am still growing and developing and so is your son.

      We never get a chance to re-play the past and see what would have happened if we’d made other choices, but it does sound to me like you made the right choice by working with your children’s needs yourselves and just getting a little input from professionals. I often strongly suspect that the hype around that idea of a crucial window of time in which things must be done or else all is lost is a way to sell frightened parents on hours and hours of therapy — often as much as 40 hours per week! — at a time when the parents are very vulnerable. While many, hopefully most, therapists are kind, caring, compassionate people who want to help children grow and thrive, never forget that all therapists are embedded in an industry that survives and profits off selling as many billable hours as possible. And I’m not singling out autism therapists or therapists for children here. All the helping professions consist of people who chose a career to help others but need to keep a good flow of clients in order to pay the bills. What this means for the health consumer is to be cautious, do your research, understand what you’re buying and what those services have a reasonable chance of accomplishing.

      But you hit it on the head when you said, “there are so many conflicting messages out there about interventions.” You’re not rambling and it’s okay to be scared and confused. You have young lives in your care and you want to do everything you can to give your boys their best chance for their brightest future. Obviously, there is only so much I can know or say because I am not there with your family. But the things you say about your son make it pretty clear to me that he’s doing just fine and you and your wife should keep doing what you’ve been doing: paying attention to his needs, helping him with sensitivity and gentleness, and loving the heck out of your gifted and neurodivergent kids.

      The boys are still young and have a lot of growing to do. If you see things starting to go off the rails a bit, call in some extra help. But don’t worry about things that are in the past and can’t be changed now. Early intervention can be helpful but I really don’t believe it’s as crucial as the hype. There’s not some magic age at which all is lost. We all grow throughout our entire lives and we all have the capacity to be helped by others at any point in our life’s journey. You didn’t make a mistake with the boys at all. Breathe easy on that! Your family sounds beautiful and you are all so blessed to have each other. Keep being the great dad you are!

  6. hello there..Im taking care of my nephew who is an autist. Im happy to have him as he is and im proud to be his aunt. I hope your post will touch the hearts of the ones who read this specially those of newly-aware parents. Thank you

  7. Reblogged this on Swan Mothers and commented:
    “When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have.”

    Exactly! We can learn how to parent the children we have and love.

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